July 1999 – It may be hard to see or even comprehend for most, but this is Nicky, 2.5 years old, using a needle to pop his own blood blister on his wrist. I am still on the fence about giving my healthy son a knife to cut his meat, but Nicky has always been incredibly conscientious about using needles or scissors to pop his own blisters. I welcomed it and even liked it because he felt more comfortable doing it himself than having me do it, even as young as 2. Crazy? Not really, not for Nicky. He’s always displayed a maturity in certain things way beyond his age. He’s a little kid for other things too and it’s a nice give and take. Nicky ROCKS! More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 655Read More →

My son Nicky was diagnosed with Epidermolysis Bullosa (EB) 12 hours after his birth, a month later we received the official diagnosis of “Recessive Dystrophic”. Here are my top 6 things to know about Epidermolysis Bullosa. 1. Epidermolysis Bullosa is a genetic skin disorder. Epidermolysis Bullosa it’s an umbrella term for a group of genetic skin blistering disorders. The condition arises from genetic mutations present at birth, which can be inherited either recessively or dominantly. Different mutations cause the different forms of EB, as the body does not produce or produce very little of certain proteins that cause the fragility of the skin. In rare cases EB can also be an autoimmune disease in which the body produces antibodies to the structural components of the skin. 2. There are a variety of types of Epidermolysis Bullosa. Epidermolysis Bullosa manifests itself in a variety of ways. The three primary types of EBRead More →

As per Nicky’s wishes, I am posting a few pictures I took a week ago of his left leg/foot. He’s been trying so hard to start walking again. Doctors and others have treated him as if it’s something so easy to walk, his EB team wants him to go to rehab, something he sooooo does not want to do (you can read about that at his CaringBridge Journal October entry). He wanted me to post these pictures to show what he’s dealing with. Let me give everyone a brief summary of what’s been going on with his legs and walking since he was born. I will try to keep it short, promise! Nicky didn’t start walking well on his own until he was 2 years old. I always marveled how his feet rarely got blisters, the skin looked different, tougher, for some reason. When he started going to school heRead More →

I normally do updates on everything ‘Nicky’ on his blog at Caringbridge, and I do try to post there at least once a month, but sometimes I feel it’s a bit constrictive. A lot of my storytelling includes photographs and I am unable to post photos over there. Well, you can post ‘some’ photos, but there are limits. You can only post one per blog and it shrinks it down to a minute size. There is also a limit of 100 photos per blog. So if it’s a post that involves photos I do it here. Yes, I could do it on Facebook, but I refuse. Facebook has deleted way too many EB wound photos and even blocked me for doing so for me to trust them anymore. I wanted to show this photo of a blister that Nicky got recently on his leg (It did go all the wayRead More →